Confused and fed up: Hi, I am getting... - British Heart Fou...

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Confused and fed up

Lisell
Lisell

Hi,

I am getting to the stage where I am really fed up with hospitals. I have a problem with my hearts rhythm. At rest it bops along at 70 - 100bpm which is fine but as soon as I move it thinks I am about to start a marathon and goes anywhere between 120-170 bpm. This is making life hard because anything can cause it, cooking, eating, walking and talking and if it carries on for too long long I end up like a sweaty tomato. One hospital said it was just Sinus Tachycardia (to be fair they did a lot of tests and I have been on many medications which I could not tolerate) and live with it. I was not a happy person so I paid to see a private consultant and he was not a happy chappie at the way I had been treated and said it was either Inappropriate Sinus Tachycardia or Supra-ventricular. So decided to go to another localish hopsital and now I'm confused. I had a heart monitor for 3 days and their assessment was that it was probably stress related (I was not stressed but I am now!) but then I get a letter with an appointment to see someone in the Clinical Physiology department. No idea really what a clinical physiology department is or what they do?

Apologies for the rant but this has been going on since 2017 and I am really reaching the end of my tether because I am struggling to work. I am a TA and specialise in children with behavioural problems but I really am struggling to do this.

43 Replies
oldestnewest

Hi my mam and sister are on beta blockers are you my doctor offered me them when I had panics as heart was bit rapid and irregular things got better when I went back on HRT low dose patches it could be hormonal 🤗x

Lisell
Lisell in reply to Curly1_

Hi, I've been on beta blockers and they worked on blood pressure but not heart rate. Had blood tested for hormone levels and all seem normal. I'm just getting frustrated with it all because something is causing it.

Milkfairy
MilkfairyHeart Star

Hello Lisell

I am sorry you are in limbo about what is causing your symptoms.

I live with a poorly understood and under recognised heart condition and I know from experience how frustrating and stressful being in this situation can be.

A Cardiac Clinical Physiologist is a health professional who carries out assessments of the function of your heart.

This includes ECGs, echocardiograms , exercise tests etc.

I suggest you contact the department the appointment letter was sent from and ask them which tests you are being offered.

Lisell
Lisell in reply to Milkfairy

Thank you for your response, good to know I'm not alone out there. Hopefully I will get some proper answers in a couple of weeks and thank you for the definition, it is something I was not aware of. Could I ask how long it took for you to be diagnosed if your condition is not well known.

Milkfairy
MilkfairyHeart Star in reply to Lisell

It took time for my diagnosis.I had a very specialised angiogram to confirm my heart condition.

I have learned that Cardiologists don't always agree and as patients we can get stuck in the middle which isn't very helpful .

Gowers
Gowers in reply to Milkfairy

That's interesting - How did the angiogram differ from a normal one please?

Milkfairy
MilkfairyHeart Star in reply to Gowers

They injected acetylcholine into my coronary arteries during the angiogram.

The response of normal blood vessels is that they shoukd dilate and relax

All my coronary blood vessels went into spasm. My coronary microvessels and coronary arteries constricted. It hurt alot and thankfully they gave my some morphine IV.

My diagnosis coronary vasospastic angina- Microvascular angina and coronary artery spasms.

They are now able to assess the ability of the microvessels to dilate by using guide wires and adenosine during an angiogram.

This means they can now diagnose microvascular dysfunction the more common cause of Microvascular angina during an angiogram too.

Thanksnhs
Thanksnhs in reply to Milkfairy

Oof that sounds a dreadful procedure, I had one ordinary angiogram it was the worst thing ever, I ended up on morphine for 24hrs, I still have flash backs, I had one there reading your post, I will never go through it again unless they knock me out, I would have another transplant first char

Milkfairy
MilkfairyHeart Star in reply to Thanksnhs

Oof going through a heart transplant sounds daunting to me!

Now I have my diagnosis I won't need another angiogram with acetylcholine thank goodness.

I agree angiograms are no fun.

I hope you continue to recover well from your surgery.

Thanksnhs
Thanksnhs in reply to Milkfairy

Thank you, it was in July, new heart is doing well, side effects from the meds are difficult just now, I think they are going to try and reduce the dosage soon and hopefully that will make a difference, that's great you have a diagnosis it must be awful knowing something is wrong but not knowing the cause, I had dilated cardiomyopathy and heart failure, I hope your treatment goes well char

Gowers
Gowers in reply to Milkfairy

Not heard of that type of test before - sounds v painful but benefits are long term so, it's good that you got through it in the end & as you say a one off experience. Thanks for taking the time to explain - good to learn more of what tests are available out there 👍

Lisell
Lisell in reply to Milkfairy

I get to thinking I'm making a mountain out of a mole hill sometimes but then I'm all out of breath just preparing vegetables for tea or walking up stairs and realise I need to do something. Just feel like I'm being a pain to the doctors.

Milkfairy
MilkfairyHeart Star in reply to Lisell

If what is happening is affecting the quality of your life than no you are not making a mountain out of a mole hill. You know your body best

I suggest you keep a diary of your symptoms to show the Cardiology team

Do you have a good GP to support you?

Lisell
Lisell in reply to Milkfairy

Hi, in a way I already keep a sort of dairy, The Kardia monitor I have lets you make notes when you make a recording so for instance when I get out of the bath and I take a record of 140bpm I will also add bathing, palpitations and shortness of breath. But I may start making general notes about how each day has gone.

Quyejoyce1
Quyejoyce1 in reply to Lisell

You need to see an electrophysiologist for a correct diagnosis and wear a monitor for at least a week

Lisell
Lisell in reply to Quyejoyce1

I have never been offered to see one of those, the letter just says clinical physiologist, I may ask about that when I go. I have worn so many monitors and even have bought the portable Kardia monitor. I never seem to get clear readings when I wear monitors.

Lisell, the electro-physyologist will be interested in mapping the electrical pathways in and around your heart. They are looking for a "short circuit" that is causing part(s) of the heart to not beat normally. It is a very standard procedure these days, so nothing to be worried about. Once they have mapped your heart's "circuits" then the Dr can decide to treat the problem with drugs or various surgeries etc. Keep with the private guy, sounds like he is doing the right thing in terms of gathering information about your condition. Meanwhile, carry on normally and rest when you need to.

Lisell
Lisell in reply to Bradee12

Hi, I wish I could stay with the private doc, but can't afford it unfortunately because health insurance won't pay for it, so stuck with NHS. I suppose I will get there in the end.

Quyejoyce1
Quyejoyce1 in reply to Lisell

Where in the UK are you based? Get referred to a specialist hospital- not a general hospital with just a cardio department. I’m under the Royal Brompton in west London. They are awesome

Lisell
Lisell in reply to Quyejoyce1

Morning, I'm in North Yorkshire and just keep being referred to local district hospitals. If this one fails I may ask to go to one in Newcastle, they have a large hospital there.

Give yourself an MOT. Begin with what is my weight and my height. Measure my waist. It's a bit difficult checking blood sugars at the moment but if you can get your blood sugar tested and your blood pressure tested you will be able to record it in your diary. Think about how much continuous exercise do I take and write it down.

Questions to ask yourself. Can I Work out my BMI, am I overweight or am I getting borderline obese. Is my waist half my height. Do I eat too much junk food? Too many cakes, buns and biscuits?

Try not to confuse activity with exercise. Do I get a fitness tracker to wear on my wrist for Xmas or put a step counter on my mobile and try and step up get a daily continuous mile in to start with.

Whenever I go near a hospital I notice that they tend to have a good look at you as you go in. If you look good, you tend to get a better response. It's all a bit of a game.

Lisell
Lisell in reply to Ianc2

Hi, I know I'm over weight by a lot but struggle to do more than 15 mins of exercise. If I do more than that I get headaches, feel sick and can have dots in front of my eyes. I try and walk around our local field a few times very slowly but doing that leaves me feeling as if my heart is coming out of my mouth and very breathless with a heart rate of 150-160bpm. My blood pressure varies day to day but is usually on the high side. I do have a smart watch I got one because I nearly passed out in school and did not know whether it was because my heart rate was high or low. It has been known to dip to 30bpm. My blood sugar levels are fine they were tested a couple of months ago. I do not eat a lot of cakes or junk food.

Hello Lisell. I like the term sweaty tomato! Hopefully I won't have another bout of sinus tachycardia as the last one landed me in A&E but if I do I'll think of sweaty tomatoes. I do hope you can get to the bottom of this. As I understand it sinus tachycardia is very different from supraventricular. Sinus is normal rhythm but supraventricular is an arrhythmia. I would have thought it should show up on the ECG which is which.

Lisell
Lisell in reply to dunestar

Hi, I have normal sinus rhythm just fast so it is some sort of sinus tachycardia. The private doc was just going off what he could feel at the time and what I told him. Wow your heart must have been going some to land you in hospital. Luckily that has not happened to me. Mine just elevates every time I try and do something.

Glad you liked my sweaty tomato phrase, its the only way I can explain how I look and feel. When I work I spend most of the day very red and sweaty hence sweaty tomato.

Hi LissellExercise is great but not if it is going to cause you problems . Try ten minute gentle walks to get started. To make it a better bet try to bring your weight down as fast as you can by chopping right back on your carbs. Work out how many calories you eat in a day. Be very honest and don't kid yourself. If you have a smart watch it should tell you how many calories you have burnt. The game is to eat less calories than you use

I know it is not the time of year for it but consider lots of salads, celery, carrots, beetroots, coleslaw, hummus with a small portion of meat or fish, without chips or spuds. or anything with lots of veg. Watch out for foods like Pizzas that contain mega calories. There is a Low Carb Healthy Fat site on health unlocked which you can find by clicking on the little square of 9 dots, top left, where you can find lots of suggestions. Another site is diabetes.co.uk. which has some great recipes.

If you think of every 2 lbs of overweight as a bag of sugar, or every 7 bags as a stone in weight that you are carrying round extra to requirements it will help to explain your problems?

Lisell
Lisell in reply to Ianc2

Hi, I don't eat very much, I have two pieces of toast for breakfast (50/50 bread), apple for lunch and tea that consists of meat and veg. So I have roughly about 1100 calories a day. I stopped drinking two years ago because my heart was scary with alcohol. I have three cups of tea a day and a sugar free juice drink in the evening. Walking is hard also at the moment as I said I try and walk around the field most days and this usually takes me about 30 mins going slowly. My son usually comes with me but walking and talking is a no no.

Hi, i have a dodgy heartbeat. Faulty electrics as I call it(LBBB). It back fires quite frequently and goes from 41- 145 throughout the day and bobs about. Most flutters are harmless. Palpitations only become serious when they go too high and last more than an hour. The majority of time it is caused from anxiety.

Beta blockers steady the pace but I have found they don't stop the flutters. I often cough when it goes out of sync(Tip)

I am in the process of having an Echo with dye first to see if I have had a silent heart attack then I am seeing my EP for tests on my electrics- stress test/provocation test- to see for Long QT's or Brugada as one of my waves in my ECG is faulty and non existent.

I have been to A and E twice this year due to my HR going out of sync 160+(SVT) they sent me home 3 hours later with No follow up so I feel your pain.(I emailed my Cardiologists secretary to fill him in)

I am 18 months in, a cardiologist and EP recently they are at two different hospitals 20 miles apart.

Holter monitors are not worth the battery they run on as they only ever point out a couple of episodes out of 72 hours which is what I had. I cannot tolerate any tablets so I am getting by on a wing and a prayer.

Beta blockers don't work for eptopics they just keep the heart steady depending on the dose.

It sounds like You need referring to an EP I was referred via my Cardiologist as I am not the standard Heart attack/stent/standard package of medication patient.

I am deaf/cannot tolerate tablets or go in an MRI where they speak to you/I have clear tubes/I was on the verge of a CA not had one. One of life's mysteries I think it is the fact I was two weeks late..46 years ago..😁Take care xx Hope you get sorted.

Lisell
Lisell in reply to Brandibell

Hi, thank you for your post. Sorry to hear you are suffering too. I have never been offered any stress test or an EP study which I find baffling. Like you Beta Blockers don't work for me and am also medical mystery. All my ECGs have been normal just fast, so because they are in rhythm they don't seem to think it matters but they don't have to live with this day to day.

Brandibell
Brandibell in reply to Lisell

You are correct and many times I have blasted my Cardiologist with those words. I would go back to your GP and ask to be referred to someone different. I hope you get sorted. X

Have you asked about water retention?

Lisell
Lisell in reply to Ianc2

No I haven't, never really thought about it to be honest. But when I go in a couple of weeks I will ask, thank you for the thought.

Hi Lisell

You're having a bad time of it .... so am I much of the time, but frankly there's no one there. You said the medicines didn't help and the beta-blockers didn't help me either, in fact they made matters worse. I also have the same arrhythmias (and more) and I was told that my arrhythmias were 'conduction arrhythmias'. So I began digging at results from my Cardio Echogram to discover that both my SA and AV nodes are diseased. I had been on Bisoprolol for years and suffered all that time, then had a break but because of heart failure, was told to take Nebivolol. The leaflet said "Do not take if you have conduction arrhythmias". No one to talk to, so I went to 3 Pharmacists. Two said ignore and take it anyway and the third, which was Boots said not to. In the end I took the stuff and my arrhythmias were horrendous and after persevering for 2 months, I stopped. It is just food for thought that you may wish to find out what is causing it.? I lost 7 years of my life on beta-blockers and what they do is interfere with the electrics of your heart, by blocking noradrenaline and epinephrine. What I established is that if you block these hormones, the heart if already struggling to connect/electrics has more of a problem.

Like you sometimes as soon as I get out of bed my heart starts and I am in Broad Complex Tachycardia, sometimes for hours. No one does anything. 2 months ago just like yourself I was catapulted in that rhythm and my heart was 188/184 for hours. The paramedics took me to A & E and they told me to shove off to your own Consultant . They did though explain that it was due to the electrics of my heart .... like you I am stuck and I am also struggling with it. Not that that makes it any easier for you, but just to say you're not alone.

With the eating, I too have that problem sometimes and went for about a year of missed beats, etc as soon as I ate. It still happens sometimes, but not as much lately. What I realised was that some foods were setting it off and they were any foods that contained sulphates/additives. It made my life a misery. Of late it's not been too bad. Have a read of this (it helped me enormously):

fedup.com.au/stories/2008/6...

I would have thought that by now Lisell you would have had some further investigations, eg Echo Cardiogram, Angiogram, etc. Hopefully they will do this/something for you.

Take care, Denise.

Lisell
Lisell in reply to Denise2011

Morning Denise, thank you for your response, sorry to hear you are suffering as well. I have had a tilt table test for POTs (that is whole other saga), many, many heart monitors, and I have had a scan of heart done, similar to scan when you are pregnant (sorry name of it has just gone out of my head) and that was normal. Never been offered any other sort of test, I think because it is in rhythm they don't think they need to look any further, but surely if a patient is coming back time and time again saying how it is affecting their lives and it is becoming harder and harder to do normal things they need to look a bit further than the end of their nose.

I do have all the symptoms of Inappropriate Sinus Tachycardia except for the average daily rate being over 100bpm. Tried to explain that it will never be over 100 as it can dip to 30 or sometimes below that. Not sure they believe me as I don't pass out, but can prove because it is in the data from my watch. But they insist is it not that. Sometimes I just want to scream.

Denise2011
Denise2011 in reply to Lisell

Hi Lisa, I sympathise with you I really do. You are a mum/mum to me and I can understand you are worried. Like me you are beating your head against the brick wall. The medical profession did nothing for almost a year until one day back in 2012 I had a heart attack and heart failure. I didn't grumble. Like you I was told everything is fine and then I decided to ask for copy reports here and there. I wasn't happy, but even today there is nothing I can do - I am ignored. In 2016 my brother bought me a Prince180B (Heal Force) hand held ECG machine. It wasn't until I took an ECG to the hospital that they actually took note at the rhythm I was showing them. You download from the disk they send and you can then download your own ECGs and print them off. It is just food for thought. This one then was just over £100. Lisell, do have a look at that link I gave you for the reaction you are having to foods/eating. It might just alleviate some of the arrhythmias. Sometimes their 'normal' might be fine, but there can be changes to your heart that is the beginning of problems. I don't disbelieve you and I feel for you I really do. It's bad enough being my age, but being you like you is yet another hurdle. The scan you had would have been an Echo Cardiogram.

Lisell
Lisell in reply to Denise2011

I have something similar to your Prince180B and it is called Kardia heart monitor and it is also a hand held device. I have over 150 episodes of sinus tachycardia a month, tried to show them to the doc when I went recently and it just said it all looks fine just fast. I shall go to my next appointment which is with a clinical physiologist with an open mind and listen to what they have to say and hopefully it will be helpful. But it does make me feel slightly better that there other people out there battling to get a diagnosis.

Denise2011
Denise2011 in reply to Lisell

Hi Lisell, yes I did read that you have this. It is obviously very good and very popular. I agree, it makes me feel better as well to know that I'm not the only one that's struggling - daft as that may seem. I don't understand how it is they are ignoring the results, I really don't, but then they did that to me as well. Oh, and don't laugh - in the main they still do even though they know my heart is 'damaged'! It will be interesting to know what transpires if you don't mind updating? Good luck and do take care, Denise.

Lisell
Lisell in reply to Denise2011

Hi Denise, I will gladly update when I've been. I expect they will ignore mine too but I shall keep on being a right royal pain in the butt until I get some real answers and not just 'we can't be bothered looking so we will say it is stress!!'

Another thought for you. How long have you been following your diet and exercise routine?

Lisell
Lisell in reply to Ianc2

Morning, I've been doing this for years. I've never been a big eater, used to go to the gym until it became too hard. Do home workouts as well as walking. Had to reduce home work outs from Tae-bo to exercise based on walking.

Have you had POTS ruled out? dysautonomiainternational.o...

Lisell
Lisell in reply to Dingledaw

Morning, yes I was tested for that and it was found not to be it.

Hi Lisell

I have been having a very similar problem. My resting heart is very low but when I walk my heart rate jumps to 140 + and when I run my heart rate sits over 190 up to 200 +. I get dizzy spells and felt funny a few weeks ago. I am being referred to a specialist ( for the second time.) the first time I got told I have a small hole in my heart but I have nothing to worry about. I have been getting on and off heart palpitations for years.

I am a 30 year old female and would describe myself as fit.

Lisell
Lisell in reply to Scotland321

Hello, you sound very similar to me, went for a walk this morning and my heart rate was 170bpm at peak and an average of 148bpm. This is ridiculous for just strolling slowly round a field. I have never tried to run, dread to think what it would be if I did. I hope you have better luck second time round. I have a feeling I could be going for 3rd time lucky.

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